Wednesday, November 13, 2013

Advice For The Non-Disabled

Sooner or later, anyone who writes or speaks on disability issues is going to try making a numbered list of "commandments" or "advice" on how non-disabled people should treat people with disabilities. I’ll give it a go:

1. When you meet someone with a disability who you're going to need to get to know ... like a coworker, likely frequent customer, or close neighbor ... make it your initial goal to find out the main interesting thing about the person, other than their disability. This is the thing ... whatever it is for each person ... that you normally would forever after associate with that person if it wasn't for their disability. Once you find out what that thing, is, you'll probably find that that is what you associate the person with rather than their disability.

2. When you reach that point, good on you! But please, don't tell your new friend, "I don't even think of your disability anymore!" When you have a disability, it's always an important part of you, even if it isn't the only interesting thing about you. It's not helpful when people forget about it, and it's not a compliment either ... like ignoring an enormous zit. A disability isn't an ugly blemish you need to "get past", it's part of the person you are getting to know. The goal isn't to "forget" it, but to put it into perspective. Still don't get it? Okay, would it be cool for a white person to say to an African-American person they've become friends with, "I just don't think of you as Black anymore!"? I know some people really would, But I hope you wouldn't. It's the same with disability.

3. People with disabilities are incredibly diverse. We don't all have agreed upon positions on everything disability-related. For convenience, I like to divide the disability community into Jocks and Nerds ... or sunny optimists and tortured, intellectual pessimists. There are activists and conciliators. There are people who really hope for a medical cure for their condition, and there are those who mainly strive for better practical tools and social justice. There are people born with their disabilities and those who came into them later in life. There are people with no income other than SSI, and there are rich disabled people ... and their concerns can often be quite different. There are disabled people who look conventionally attractive, and there are those who are beautiful in ways that take imagination and an open mind. There are disabled people with the resources and tools to be highly functional, and there are those who struggle every day just to survive. This isn't an instruction or piece of advice, it's just something to know and not forget.

4. Many of us disabled people try to project a "can-do" image of ourselves and our community. There are good strategic reasons to do this, and it's not false, but it usually isn't the whole story. The one negative thing you need to remember about having a disability is that it is exhausting. The most commonly used explanation for this is the “Spoon Theory”, but I’ve got another analogy I think might be easier to understand. Think about how tiring air travel is. It’s physically wearing and … this is key … mentally exhausting. Well, that’s what a lot of our everyday errands around town are like. The air travel analogy is even more apt when considering disabled people who don’t drive, who rely on buses, taxis, or rides from friends and family. Any of these at any time can turn out to be late, or not accessible. Destinations, too, often turn out to be inaccessible, even when we’ve called ahead and been told that they are accessible. And every late bus, every inaccessible place, every wasted trip is twice as hard and tiring for us as it is for the average non-disabled person. Life with a disability is extra tiring, even when everything goes perfectly. When things fall apart, it can be really, really hard for us to hold ourselves together.

5. Exhaustion is the number one reason why we care so much about accessibility and adaptation throughout the community, and why we sometimes "lose it" when things don't work the way they're supposed to. The key thing to understand here is that accessibility is pretty much an either-or proposition. There aren’t many gray areas. A little step, or “just a few” steps is just as much of a barrier to a wheelchair, or someone unsteady on their feet, as 12 flights of steps. A bathroom stall that’s 2 inches too narrow isn’t “almost” good enough. 2 inches too narrow is just too narrow … you can’t get through. That’s why we sometimes seem overly nit-picky and unwilling to compromise. When it comes to accessible design, there’s really not much point in splitting the difference, and we kind of have to insist on things being designed or adapted in a certain way, otherwise there’s no point in even trying.

The bottom line to all of this is that when you are dealing with someone who has a disability, the best gift you can give is patience. Patience with our way of doing things, and patience with our need to vent once in awhile. It’s a small thing you can do that really can make our lives a lot more bearable.